Patients’ Perception of the Impact of Innovation on Hemophilia Care Management Organization: A Qualitative Study Protocol (INNOVHEMO Study)
Bibliographic record
Abstract
Karen Beny,1,2 Benjamin du Sartz de Vigneulles,1 Valerie Chamouard,3,4 Ronald Guilloux,5 Valérie Gay,6 Claude Negrier,3 Claude Dussart1,2 1EA 4129 Laboratory P2S (Health Systemic Process), University of Lyon, University Claude Bernard Lyon 1, Lyon, France; 2Central Pharmacy, Hospices Civils de Lyon, Lyon, France; 3Reference center on hemophilia and other constitutional hemorrhagic diseases, Groupement Hospitalier Est, Hospices Civils de Lyon, Lyon, France; 4Pharmacy, Groupement Hospitalier Est, Hospices Civils de Lyon, Lyon, France; 5Laboratory S2HEP, University of Lyon, University Claude Bernard Lyon 1, Lyon, France; 6Hemophilia Care Center, Centre hospitalier Métropole Savoie, Chambéry, FranceCorrespondence: Karen BenyCentral Pharmacy, Hospices Civils de Lyon, 57 rue Francisque Darcieux, CS 60004, 69563 Saint Genis Laval Cedex, Lyon, FranceTel +33 4 78 86 66 92Fax +33 4 72 67 88 74Email karen.beny@chu-lyon.frBackground: New therapies provide a favorable evolution in the care management of persons with hemophilia. However, the impact of these new therapies on patient care organization remains to be determined. A qualitative study will be implemented to analyze patients’ perception regarding the impact of innovation on the organization of their care management. Secondary objectives will include refining specific factors related to persons with hemophilia (barriers or facilitators, especially the place of treatment) to consider within an organizational impact analysis.Patients and Methods: Semi-structured individual interviews will be conducted via videoconferencing or by phone by two researchers using an interview guide. Participants will be recruited from the Rhône-Alpes region, in France. Physicians from two hemophilia treatment centers will identify eligible patients. Moreover, a call for volunteers will be launched by the Rhône-Alpes committee of the French hemophilia association. Interviews will be conducted with adult patients, adolescent patients or parents of a minor with hemophilia regularly treated prophylactically or on demand. Data analysis will be performed with NVivo® software. Each interview will be analyzed by two researchers using an inductive content analytic method.Discussion: The INNOVHEMO study is an original study analyzing the way patients perceive the impact of an innovation on their care management organization. The resulting patient-specific factors, identified as barriers or facilitators, will need to be integrated into a more comprehensive analysis of the impact of innovation on care management organization.Keywords: therapeutic innovation, hemophilia, care pathway, qualitative research, organizational aspect, patient experience data
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.027 | 0.023 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.002 | 0.001 |
| Science and technology studies | 0.004 | 0.003 |
| Scholarly communication | 0.003 | 0.003 |
| Open science | 0.002 | 0.004 |
| Research integrity | 0.002 | 0.003 |
| Insufficient payload (model declined to judge) | 0.018 | 0.003 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".